Earlier today Leftwing Idiot took me to one side to talk about some touring plans that look likely to fall through. They relate to us taking our latest show, ‘Not I’, to the US at the start of next year, 2019.

This was disappointing. I understood that loads of work had gone into trying to make it happen but for a variety of reasons, being able to do it in 2019 now seems unlikely. The venue wants to plan for the start of 2020 instead.

Within the arts sector it’s not unusual to make plans many years in advance, but for me, thinking even a year ahead at the moment feels tough.

As Leftwing Idiot and I talked, I felt tears quietly rolling down my cheeks. They weren’t tears of disappointment though. I feel proud of ‘Not I’ and want to share it with new audiences, but I’m also relaxed about not being able to go to the US next year, and feel content with what we’ve already achieved.

My sadness came from not being able to say a wholehearted and firm yes to touring it in 2020. In the last year my body and health have deteriorated considerably for reasons that are still not fully understood.

What I’m physically able to do keeps changing, and new challenges seem to arise every few months. At the moment I have only a few hours of useful energy each day, and in the last six months simply doing a wee has become an impossibly long-drawn-out process.

I have to keep adjusting and readjusting to my changing body. I can just about imagine performing the intense ‘Not I’ monologue in three months time, but trying to work out if I’ll be able to do it in a year and three months is a very different matter.

I was a bit taken aback by how upsetting imagining the future has become. Leftwing Idiot seemed to understand this implicitly and gave my hand a reassuring squeeze.

At the moment I’m managing by taking a practical approach to each day, piece of work, or project. There’s often a big gap between what I want to do and my physical capacity to do it, but this is something I’m learning to negotiate.

As a disabled artist with unpredictable and fluctuating health, making decisions about what work to take on, and how far in advance to plan, adds layers of practical and emotional complexity. It’s a complexity that I imagine is largely invisible to people who don’t have a body like mine as part of their lived experience.

Thankfully there are some amazing artists whose work is helping to change this. Our wonderful friend the Vacuum Cleaner publicly shared his Disability Awareness Document earlier this year, and interdisciplinary artist Ria Hartley has created the incredible Ecologies of Care which provides arts professionals who have access requirements with the tools needed to understand and express their needs.

I very much hope that in the next few weeks and months I’ll get more clarity about my health and what to expect. I also hope that taking ‘Not I’ to the US in the future, whether that’s in 2020 or beyond, is possible. But for the moment just concentrating on now and next seems to be all I can manage – and I know this is absolutely OK.

And in my immediate future, now and next means a big hug and a long nap.